IMAGINE being a child or a teenager and being told you have a degenerative muscle disease which will lead to a loss of muscle co-ordination, fatigue, vision impairment, hearing loss, slurred speech and then a serious heart condition - this is Friedreich Ataxia. 1 in every 30,000 affected. 1 in 90 are carriers. There is currently no cure.

Encouragingly, through the amazing work of researchers, our FA community and fundraisers around the world, SKYCLARYS, the first ever treatment for Friedreich Ataxia is now available in the United States. Biogen Australia has confirmed that they plan to make regulatory and reimbursement submissions for SKYCLARYS this year following the recent approval by the European Commission.